In the first year of Jim living with ALS, Peggy suggested that we record his voice reading children’s books aloud while he still had his voice. Like many families living early on with ALS, we delayed voice-banking. Voice-banking is one of many efforts in ALS land that can feel overwhelming, even morbidly pessimistic. Reading a children’s book, though, felt quite the opposite of pessimistic; it felt like an act of hope. At the time, Jim’s first grandchild, Rowan James Plews-Ogan, was, in fact, still a figment of our collective imagination (pun intended for those aware that we called Rowan “fig” for some time: While in Erin’s second trimester, Rowan was about the size of that endearing fruit).

There was a span of time between the symptoms setting in and the advanced stages of ALS where so much was predictable but there was so little to count on.  Dare we hope? Would Rowan know his grandfather? Would Jim be able to read bedtime stories to his grandchildren, to give life to their imagination?

Yes to all, and more.

Hope suffers from some unfortunate misunderstandings. With ALS, a currently 100% fatal disease–we often misapprehend hope as beholden to an unrealistic endpoint: A cure accessible during one’s lifetime. Hope in this context is often considered a dalliance; a quixotic pursuit. Some (maybe particularly doctors) even suggest that hope in the context of a disease like ALS is “false hope”.

It turns out, as a practical matter and despite little support, hope thrives during ALS when many other things wither, and this hope has no resemblance to windmills. Jim noticed this. Hopefulness became one of the twelve virtues in the Turbocharged Living Tool (also known as the Hummingbird Hope Tool). It is our intention to ponder one of these twelve virtues each month on this blog during 2026 as a tribute to our dear Jim.

Hope is a lot more nuanced and rich than we give it credit for, and a lot more fundamental to our being human than we may generally acknowledge. Research[1] on hope conceives of it as distinct from optimism.  Optimism rests on the belief that a good disease outcome will happen.  Hope is independent of disease outcome. Second, hope denotes a sense of agency and a pathway to achieve a goal (a will and a way). Third, hope does not involve denial.  In fact, hope allows for full awareness of danger and develops only if it is based on reality. In short: Hope is about imagination and agency.

Hope took many forms during Jim’s years living with ALS. One of them was his goal of walking 50 steps during our Go50 challenge in April of 2024–three months before he died.  

Before ALS, Peggy and Jim ran marathons, climbed the alps on bikes, hiked, camped and paddled backcountry Alaska, cycled through a hurricane.  But that audacious goal (hope in action) of walking 50 steps with Mr. ALS on board required a whole new stratosphere of courage, commitment, stamina and grit.  Hope in ALS looks like our friend Andrea Peet doing 50 marathons in 50 states, or countless ALS advocates writing their congresspeople using eyegaze to type, showing up in Washington having navigated air travel and hotels in their power wheelchairs (just imagine the logistics…) to advocate for federal funding.

So how can we boost hope? That is what we are doing in the Hope project at Duke and UVA, examining the effects of a hope-boosting intervention on patients and families living with progressive diseases like ALS, Parkinson’s and Muscular Dystrophy. This hope intervention is a combination of Dr. Rick Bedlack’s hope question (“Tell me three things you are hopeful for today”) and Dr. Jim Plews-Ogan’s Turbocharged Living Tool.

By the time we got around to recording Jim reading children’s books, his voice was showing signs of decline. His hands were struggling to turn the pages. As Jim read, Will’s job was to ring the Tibetan singing bowl with each turn of the page (the bowl Jim used daily for his contemplation practice). Rowan now listens to these stories often before bedtime, insisting that “Grandad read that one” and laughing when the dog barks at the start of one recording. The recordings hold great hope, now in perpetuity, for all the children, grandchildren, and former patients who will listen, to be inspired and soothed.

As Jim said, there is hope in action. His hope, and the hope of the people with ALS we have come to know, defies the misunderstanding that hope is pegged to an end state, that it is foolish, that it is dangerous. If he ever contemplated an end state, it was one far beyond his own life. Like so many in the ALS community, he woke up every day to fight for a cure for those who would long outlive him. He sat before congress to testify that provisionally approving drugs that show some promise in treating ALS is not an act of false hope. And he appreciated that hope can be practiced in small acts every day no matter how foul the odds. He didn’t wait, hoping that he would live long enough to read books to his grandchildren. He knew he would not, so he read the books.

When Rowan James was old enough to sit for a bedtime book, Jim was not able to read aloud anymore, but he sure did live long enough to whisper goodnight and to beckon Will or Peggy or Erin over to turn on a recording of Goodnight Moon:

[1] Galin S, Heruti I, Barak N, Gotkine M. Hope and self-efficacy are associated with better satisfaction with life in people with ALS. Amyotroph Lateral Scler Frontotemporal Degener. 2018 Nov;19(7-8):611-618. doi: 10.1080/21678421.2018.1476546. Epub 2018 May 31. PMID: 29848125.